My Toxic Mold Illness Story (CIRS)

I am writing this post to bring awareness to a chronic illness called CIRS (Chronic Inflammatory Response Syndrome, AKA Mold Illness) and to help anyone who might be suffering from mold illness.

In this post, I will share my mold illness story. I will explain how I first started getting sick, what my symptoms were, and how I finally figured out that all of my health issues were caused by mold. I will also share how we found and re-mediated the mold in our house, and I will discuss my journey to regaining my health.

If you’re interested in hearing more stories from people with mold illness, check out this article with the experiences of 32 people that have suffered from mold illness and this article about steps people took to survive from toxic mold exposure.

Finding Mold- The Beginning of My Mold Illness Story

We moved into our first house despite the inspector finding moisture in our air ducts, a leaking pipe behind our bathroom wall, and mold under our kitchen sink. I didn’t know at the time how dangerous mold is. They said they would fix the issues, so I never thought about it again.

In 2013 my uncle and dad were helping us remodel our bathroom. When they took the shower apart, they found lots of mold behind the shower and inside of the bathroom wall. My uncle helped replace our bathroom walls, shower, and flooring to get rid of the mold, but we did not know the importance of proper mold removal. The mold spores likely spread throughout our entire house.

First Signs of a Problem

My daughter was born in February 2014. I was really tired all the time….especially after I went back to work, but I thought that was normal. I also thought it was normal for my hair to fall out so much because I was breastfeeding.

Fatigue

After a while, the fatigue got so bad that I didn’t even want to eat because I would rather just sleep. Even taking my daughter to the park or the zoo was so tiring that I could barely walk and would have to sleep for hours afterward to recover.

Infections

I also found myself getting sick more often with all kinds of infections such as sinus, respiratory, and bladder infections. Small scrapes and mosquito bites would turn into bad infections and I would have to take strong antibiotics to prevent the infection from spreading to my blood.

Brain Issues

I was having increasing problems with conversations. I would forget what I was saying in the middle of saying it. I started forgetting things like the reason why I went into another room or opened the refrigerator, etc. I always forgot simple words or names of people as I was talking. Simple tasks like working on a computer became confusing and difficult.

Other Strange Symptoms

I became chemically sensitive, started losing my hair, developed severe acne, and my whole body was dry and itchy. I experienced severe headaches, anxiety, POTS, and stiff and achy muscles and joints. My stomach would bloat up to the point that it looked like I was 3 months pregnant and I became sensitive to most foods I was eating.

I had a whole host of other strange symptoms.

• I started having hypnogogic hallucinations at night.
• The area around my mouth turned a bluish-green color.
• My hands turned yellow.
• I started shocking everything I touched and could not push a grocery cart because I would get strong shocks the entire time I pushed it.
• I started developing sores in my nose, mouth, and ears.
• I got shingles.
• I became sensitive to touch, light, and sound
• I had severe shortness of breath.
• I got a weird jittery sensation in my arms and legs. It felt like something was crawling under my skin.
• I lost 14 pounds in 5 months and dropped to a scary weight of 98 pounds. (I’m 5’8”).
• For a while, I always had a low-grade fever of 99.5 to 100.2.
• At other times, my temperature would fall to as low as 95 degrees.
• I had severe exercise intolerance.

First Diagnosis

By the next year, the symptoms were getting worse. I ended up going to a walk-in clinic because I was having shortness of breath, dizziness, and headaches.

The shortness of breath was very severe and was scary. I felt like I was constantly gasping for air and could never get a full breath.

They sent me to the ER and ran tests like a ct scan, chest x-ray, and heart scans, but they didn’t find anything.

My family doctor ran lots of tests but all of them were in the normal range. Then she tested my thyroid antibodies which were abnormally high, and she told me I had Hashimoto’s.

Completely Changing My Diet and Lifestyle

I watched every video, docuseries, and health summit I could and learned about the diet and lifestyle changes I could make to put my autoimmune disease into remission. I made lots of changes to take back control over my health and to stop the autoimmune diseases (I found out I also had a few other autoimmune diseases). At this time, I still didn’t realize that toxic mold was causing all of my symptoms, including my autoimmune diseases.

Diet Changes

I switched my diet to all organic meat, vegetables, and fruit, and I only drank water. I went on the autoimmune paleo diet (AIP) for 1 year and then slowly transitioned to a Paleo diet. I still mostly follow the paleo diet/elimination diet.

Environmental Changes

I changed my toiletry products/ cleaning products. I switched to using only products with an EWG rating of 0-1. I began making my own deodorant and toothpaste, switched to organic cotton/ unbleached feminine products, and started using non-toxic cleaning supplies. I stopped taking all over the counter and prescription medication.

I switched to using organic bedding and started using air filters and water filters. We switched to using only glass containers instead of plastic and replaced all of our toxic nonstick pans with healthier options.

Stress Management Changes

I started trying to sleep at least 8 hours each night and started incorporating several things to improve the quality of my sleep. I started getting weekly chiropractic adjustments, I tried to stop bringing work home from school and I started working on time management.

More Than an Autoimmune Disease

Despite all of the changes I made to my diet and lifestyle, and despite the fact that my antibody levels dropped in the normal range, I was increasingly getting sicker and sicker. I was overwhelmed by the severe ups and downs of my health and was getting discouraged.

I continued to watch every documentary series and health summit I could about autoimmune diseases and read several books. They all talked about finding the root cause.

Each doctor’s visit, I would come with a list of new blood tests to try, but my results were always in the normal range.

It wasn’t until my daughter started having similar symptoms and was diagnosed with Hashimotos that I started to think about the possibility of mold causing our bizarre symptoms.

Diagnosed With CIRS

I went to my doctor with another list of blood tests that I wanted to get done. This time, every single one of the blood tests were abnormal. I was diagnosed with Chronic Inflammatory Response Syndrome (Mold Illness.)

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Our First Attempt at Remediation

In April 2017 we had the mold remediated in our kitchen. A mold company removed all of our kitchen flooring and cabinets and replaced some drywall. There was a significant amount of mold under our kitchen sink and on the wall behind the kitchen sink and dishwasher.

I thought that this would take care of my symptoms, but I still continued having worsening symptoms. And my blood tests still showed abnormal results despite being treated for mold illness.

Our Second Attempt at Remediation

We had the mold company come back to our house to inspect again. This time, they found mold in the attic and remediated it.

Still my test results were not normal and my health was not improving.

Our Third Attempt at Remediation

In December, my daughter and I were still very sick so my doctor suggested testing our house to see if there was still mold.

The test came back showing that we had dangerous levels of mycotoxin producing molds and that it was not even safe for us to live there.

We knew that we had no choice but to move, but we needed to completely remediate our house in order to sell it.

The mold inspector came back again and thoroughly inspected every part of our house with multiple tools to see if they could locate the source of the issue. They couldn’t find anything. They decided to put cameras into our ductwork and sure enough, the mold was in our air ducts. Every time the furnace or AC would turn on, toxic mold spores were blowing around our house.

We sealed our ducts with something called duct armor and installed a photocatalytic air filter. We wiped down our entire house from floor to ceiling with special cleaners and fogged. Finally, the mold was gone.

Stressful News

Even though we had gone through the costly process of remediating everything, my doctor told me that it still was not safe for my daughter and me to live in our house because even the smallest amount of mycotoxins from mold spores would make it impossible for our bodies to stop overreacting.

She also told us that we had to get rid of almost all of our possessions before we moved into our new home so we didn’t risk bringing the mold problem with us. This is a common protocol for people with CIRS. The only thing we could keep was our new leather furniture that was professionally treated, our dishes, and our clothes. (We had to wash everything we brought with us with a special solution.)

Starting Over

We had to get rid of almost all of our possessions. We got rid of all of our small kitchen appliances, books, musical instruments, and nearly all of my daughter’s toys. We also had to get rid of all porous furniture including bed frames, mattresses, bookshelves, dressers, lamps, and desks. We couldn’t take any electronic devices such as laptops, TVs, iPads, and DVD players. We had to get rid of all of our cleaning and bathroom supplies such as our vacuum cleaner, all cleaning supplies, air purifiers, blowdryer, and other bathroom items like makeup brushes, etc. We couldn’t bring any photographs, photo albums, or paperwork.

We basically came to move into our new house with only clothes, dishes, and a couch, chair, and table. My family helped immensely and gave us money and bought things off of our Amazon wish list to help us.

Around the time we moved, I also found that the classroom I had been teaching in had mold so I had to get a job at a newer school.

A Fresh Start

Getting rid of everything we owned and moving to a new house and a new school was very stressful at the time. But when we moved to our new house with much less stuff, my mindset on the importance of stuff completely changed. Suddenly, possessions didn’t matter anymore and I really grew to enjoy more of a minimalist lifestyle.

Treating Mold Illness

Within a couple of months, it became clear that it would take more than just moving houses and getting rid of possessions to feel better. I began a treatment protocol that involved several compounded medicines and supplements including a binder called Cholestyramine.

The first time I took this binder I got it from the regular pharmacy. It came in orange-flavored packets that I had to dissolve in water. It did not go well. I got lots of symptoms and could not continue taking it.

This time, I got Cholestyramine from a compounding pharmacy. It came as an awful smelling powder in a large tub. A friend of mine who had already gone through the treatment suggested putting the powder in capsules to make it easier to take.

I bought a capsule filler and empty gelatin capsules and spent a few hours filling hundreds of capsules. The work was well worth it! It was so much easier to take the Cholestyramine this way and I made it through two rounds of the treatment with few side effects.

I continued to follow my doctor’s protocol for the next year and a half and took various supplements to help calm the inflammation in my brain and body. I started feeling so much better and found that I was able to walk longer distances, do active things with my family without crashing afterward, and my brain was so much clearer.

It’s important to note that I had several ups and downs during this time. But my “downs” were slowly starting to lessen in severity and my “ups” lasted longer and longer.

Better, But Not Done Yet

In my journey, I had addressed many layers of issues that were affecting my health including my diet, my lifestyle, sleep, toxic household, and body care products, etc. I felt like I was 90% back to my normal self before I got sick. I passed the VCS test (Visual Contrast Sensitivity Test) for the first time. I excitedly went to my doctor and asked for the blood tests to confirm that mold illness was behind me.

I anxiously waited as the results came back. About half of my lab tests went back to normal range, but the other half remained abnormal.

I am continuing to focus on healing my body and actively trying to regain full health. Although I am not 100% better, I’m so happy with where I have come so far!

How Can I Help You?

I felt very alone during the time that I was dealing with mold illness. There wasn’t that much information online at the time, and it was a scary and expensive journey.

I hope that this post helps some of you. If you have a host of unexplained health issues or autoimmune issues, I want to encourage you to look for the root cause.

If you have any questions or think you might be suffering from mold illness please feel free to leave a comment or question below or contact me by email.

I have learned so much and know so much information about mold illness. I would love to be a resource for you.

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